Thursday, February 22, 2024

Our Football Fan


That smile!

Roman is a big football fan, and he loved loved loved going to a real live Aggie football game at Kyle field back in November.  His daddy is really hoping it sticks since none of the other boys are super interested in football.

He is often found in this position when a game is on.

Here's a couple of pictures from his first Aggie game back in November. He had THE best outfit, and we had the best seats too.   He loved the band and all the noise!
 






Wednesday, February 14, 2024

"All of Me"

Isaac is playing "All of Me" by John Legend and Roman is acting all Ray Charles, but without the sunglasses.


 Yes, yes.  I am crying in this video.  Roman's therapist had changed his straw and cup (same formula) the day before.  He "could" drink out of it, but he was refusing it this particular evening.  We tried everything and he was just screaming and angry that he couldn't have his old straw cup.  When everyone had finished dinner and Isaac started playing the piano, I sat there next to him because Roman loves to "play" the piano with him.  Brian was videoing this because, of course, it is adorable and I was just thinking how exhausted I was from the struggle and how wonderful and very worth it Roman is.  They were tears of joy and struggle all mixed up.

He ended up drinking from the cup when he was calm and distracted by the piano.  We have since backed up and are working on that straw and cup in therapy and trying to push him, but not too much.  It's a very fine line.

Tuesday, February 6, 2024

Senior Night

I mentioned recently that Genevieve is super busy right now and rarely home. That has lent itself to a few illnesses. She had a stomach bug that many people in the basketball team also had. And last week she was home with a fever and a sore throat that my mommy instincts led me to take her to get a strep test which was positive.  When she started to get sick she was panicking that she was going to miss her senior night for basketball. The last home game for seniors they do a special presentation and they give them a personalized basketball, team photos framed, and a basket of goodies that the teammates collect.  



Luckily we got those antibiotics just in the nick of time for her to be allowed to go back to school Friday afternoon so she could be a part of her senior night. However she had missed several days of practice, had been in bed, and was very weak still.  But Genevieve has all kinds of drive and motivation, and she played almost the entire game with a beet red face.  It was a good game, and I'm sad for the season to be ending.  I only have one more that's interested in basketball, Isaac and Judah are playing baseball this spring.  I don't have anything against baseball but it's just not as exciting to watch as basketball and the games are so very long.  Roman really enjoyed watching basketball all season and I'm not sure how he'll feel about baseball since it's harder to see what's happening and much slower.  He loves all the action and all the noise of a basketball game.


Back to Genna's night, her coaches said that she was "tenacious with a smile" which is so very true!  Her friends in the stands made cut outs of her and some of the other seniors and put them on Popsicle sticks which was kind of adorable.




Saturday, January 27, 2024

Datsun 280zx

We are now the proud owners of a "project car" that will hopefully at least get Isaac to and from work here in about 6 months (unless we can find anyone around here that hires a 15 1/2 year old.)  Brian talked me into buying this car made in 1983 because he wanted to teach Isaac to work on cars and this aged car will be easier to fix since it isn't computer based.  Also the parts aren't too expensive.  So, first on the docket is to fix the seat belts so it is safe to drive, and there a couple other issues to make it more reliable.  If this all pans out, he will be buying this car from us at some point.



Isaac has been a rock star driving the van around for us during the day since he got his permit in September.  He's not ventured on the highway yet, but he is probably ready now.  I am proud to say it is a rare occurrence that he makes me nervous which is so different than when the girls were learning.  They also didn't learn on the big 12 passenger van.  This means he gets a lot more practice since that is primarily what we drive.


 

Monday, January 22, 2024

Roman's Heartiversary on January 21st!

 





Today is Roman's heartiversery! It's been 2 years since he had his heart surgery to correct his complete AV canal defect. Roman would not be alive if his surgeons had not been able to perform this surgery for him. We thank God for his surgeons and for the medical advances to make his life possible. He is doing great! His cardiologist said his heart looks good and cleared him to be seen in one year for his next checkup. Although he has a couple sutures trying to work their way out from his chest, it is otherwise closed, uninfected, and we've been told not to worry about them. 😊

He's had another rough autumn/winter so far with many illnesses. He had COVID and RSV again, as well as Strep, a couple ear infections, and a sinus infection. He did get his second set of ear tubes on December 12th, and that has been uncomplicated which is always our hope.  

We are, as always, so grateful for all the prayers 🙏. He's truly been such a blessing to each of his brothers and sisters and to Brian and I. Here's to another year with this little man with a big heart. 



His face has had this rash for a while due to all the slobber and snot that are constantly on his face.  We are alternating between vaseline and aquafor right now which has worked in the past, but not so well right these days.




Having his formula with Daddy and Luna while watching some football.  He loves football and basketball so far.

This morning, the day after his heartiversary, he had speech therapy.  I showed her his list of words that he can say, he demonstrated some of them during therapy, and she said that she has never had any child with Down syndrome with this many words.  She said he is really bright.  That just made my day!

Friday, January 19, 2024

Another 4th Generation Aggie!



 Genevieve applied to three colleges and got into all three before Christmas. She has decided that she will be going to A&M where her sister is. She, like Hannah, will be a 4th generation Aggie. My grandfather, my dad and all his brothers, my mom, and Brian and I all went to Texas A&M.

People keep asking me if she's excited, and I realized I really wasn't actually that sure. I asked her and she said that yes she is happy that she got in and somewhat excited. However, she said that she is enjoying her senior year so much she just wants to live in the moment not really think about next year.  She and Hannah are so very opposite. Hannah couldn't wait to get through her senior year and go to college.  

With college applications and her play behind her, Genevieve's focus right now is on her senior thesis which is on the feminine genius using the books, the Odyssey, The Lion the Witch and the Wardrobe, and the play Antigone for her defense. She is also in the middle of basketball season where she is the starting center Post and usually starts the game with the ball tip.  She is also working, has a very full social life, and a constant stream of babysitting requests.  This makes it so that we rarely see her, and she doesn't even make it home for dinner most nights. When she is home with free time she is painting, drinking hot tea, or snuggling with Roman.  She loves to take Roman on walks when the weather is not quite so bitterly cold.  I often will go with her if I have time and we have our very best chats during these walks.  I am working on her senior photo board and gathering pictures for her senior banquet. Once we pick a date for her graduation party her announcements/invitations will get printed.

The aforementioned play that she was in was a one act Little Women in which she played Meg, the oldest sister.  She killed it and we were so very proud of her!  She particularly shined during the engagement scene in which she gets very flustered and played it to a tee.  That scene filled the audience with giggles.

In costume


Thursday, January 18, 2024

Does he talk?

At his cousin's house, he picked this up immediately.

His hair got so long in the last month or two.


Watching his brothers jump on the trampoline.  (Before the cold snap, obviously!)

The boys were taking a selfie.

(After his haircut) He was saying "Amen" here after prayers for my cousin.

People often ask me if Roman talks and I've always told them no, but he does say some words.  Here is a list of his current words as far as I have kept track of.


Mama (at 6 months old in hospital after heart surgery.  I have lots of witnesses 😉)
Dada
Hannah
Luna* with sign for dog
Genna
Judah
Isaac
Night night
Yay*
Bye (usually says with d sound)
Bubba (what he calls his pacifier) with sign
Bubbles with sign
Pop
Help with sign*
Up with sign*
Down (usually just the d sound) with sign*
On 
Off
Light with sign
Shirt
Shoes with sign
Shhh with sign
Amen with folded hands
Book with sign*
Please with sign
Cheese with sign and a smile 😉
Juice with sign
Bed with sign
All Done with sign

In case you lost count that is a whopping 28 words, and I'm probably forgetting some.  Unfortunately, many of them are difficult to understand if you're not in his daily life.  Also some of these words he will repeat for us but will not use spontaneously.  I put a star next to the ones he consistently uses spontaneously, on his own without prompting.  I often have to tell him to "turn on his voice" if he is signing something he knows how to say.  That is a phrase the speech therapist uses.  He has more than double this amount of words in signs.  He picks up signs crazy fast, but because he lacks the dexterity many of them look similar and we have to use context to distinguish them.

Favorite book: Chicka Chicka Boom Boom
Newest accomplishment: drinking from a hard twisty straw, the twisty part makes it harder to suck.  So his cheek muscles have to work harder.
Biggest Struggle: Eating, specifically, any actual solids even dissolvables if not mixed with smooth baby food
Health:  currently on antibiotics for a suspected sinus infection on the heels of the antibiotics for strep throat.